6 Things That Tick Me Off About My Ulcerative Colitis

I still get angry when I reflect upon the fact that I was sick for five years of my life. I’m generally a very happy person, so experiencing such overwhelmingly negative emotions is unchartered territory for me.

I know that it’s both normal to feel anger and healthy to vent it out, so here are the six things that tick me off the most about coping with my chronic, debilitating illness — ulcerative colitis — for so long.

1. I was young. I was first diagnosed with ulcerative colitis when I was 27 years old and by the time I turned 29, things had gone way downhill. I was much too young to feel as bad as I did and it wasn’t fair that I was forced to spend so much of my life in and out of doctors’ offices. My arms were pricked on hundreds of occasions for lab work, and I have had so many IVs, I swear I could probably teach a phlebotomist how to do his job.

I spent hours in waiting rooms, exam rooms, infusion rooms and hospital rooms. On top of that, I wasted thousands of hours on the floor of our living room dealing with doctors’ bills, insurance claims, unmet deductibles and insurance company glitches.

My life was consumed by my health, or lack thereof, and none of it felt like it should be happening to me.

2. I was a newlywed. When my husband, Mike, and I got married, I was a happy, healthy, fun-loving young woman who loved to work out, go to concerts, travel and party. Just four months later, I was extremely ill and could barely make it out of our house. We hadn’t signed up for the type of life that would come with ulcerative colitis, but neither of us had a choice in the matter.

We missed concerts, vacations, birthday parties and ski trips. We passed on dinner invitations, New Year’s Eve plans, late nights with friends and romantic weekends for just the two of us.

Mike was incredible from beginning to end. We grappled with an array of difficult emotions over the years, but we also made extreme efforts to connect whenever we could. Fortunately, we both believed in counseling and each of us found extraordinary therapists whom we loved and trusted for years.

A chronic illness is difficult for anyone to face, but it was especially rough for two young, vivacious newlyweds.

3. I became “the sick person.”As time went on, everyone I knew eventually found out that I was sick. Of course it was wonderful that my loved ones cared so much and it meant the world to me to feel their support. But it also became a bit depressing that every time someone reached out, the first question was always, “So… how are you feeling?”

I wouldn’t have wanted it to be any other way, but the focus of our lives was suddenly always on my illness, and that sucked a lot of life out of Mike and me.

4. I still have daily reminders. Two intense surgeries finally gave me my life back, but I was left with several scars that run down my abdomen. I have to admit that even though I wear my scars with pride, it does bother me that I will never look the same in a bikini.

Sometimes it’s hard to believe that all this really happened to me, but then I glance down at my belly and I have confirmation that indeed it did.

5. I put off having kids. I don’t want to come off as spoiled in any way, because I know I was very lucky to get pregnant and deliver a healthy baby girl last year. But I had always imagined starting a family when I was about thirty years old and hoped that I would have three kids, just like my parents did. When Mike and I fell in love, we shared that vision for our family.

My illness caused us to put off having kids for five years, and although starting a family at thirty-five is quite common these days, it’s just not what we would have chosen.

My high risk OBGYN also warned me that after having two major abdominal surgeries, plus a pregnancy and a c-section, it might not be safe to endure more than one more pregnancy.

We are beyond happy with our one child, but definitely hope to add to our little clan if possible. There are many other ways to have children these days and that does comfort us. Of course we know that whatever is meant to happen will happen, and we are content with that.

6. I missed five years of my life. Without a doubt, what bothers me the most about having had to deal with ulcerative colitis is thinking about the amount of time I lost while I was sick.

Every day was a challenge and all I wanted was to be healthy again. I had to endure months-long courses of medications, a year-long drug trial, and months-long healing after various surgeries. It was a lot of waiting, and even more time spent hoping that the months would pass quickly.

By the time I was truly healthy again, I was suddenly thirty-four years old. It felt like I had jumped from being twenty-nine to thirty-four, and everything that happened in between was a blur.

I also have a decent amount of memory loss from those years, which I attribute to being impaired by various medications, as well as having to endure such traumatic challenges, both physically and emotionally. It’s almost as if I just want to forget that some of it happened to me.

I hate that I lost those years of my life, but I’m relieved that I’m now able to put them behind me. Most of all, I’m thankful that I had such an incredible partner to ride out the storm alongside me.

I really am one lucky lady.

Have you grappled with feelings of anger about having a chronic illness? Can you relate to the six things that make me the most angry? Can you add to my list? Please share your stories in the comments section below.

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ABOUT THE AUTHOR

Ali Lambert Voron

Ali Lambert Voron knows what it's like to face adversity. At 16 she was diagnosed with alopecia areata, an autoimmune disease that caused her to lose all of her hair. Ten years later she was diagnosed with...read more

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